Monday, 25 July 2016

Recently
the BBC ran a story that over 75's are responsible for 57% of physical assaults on NHS staff in hospitals. These assaults range from biting and pinching
through to some of the most serious attacks that are recorded. In trying to
explain why these incidents are happening, the stress and confusion that a
hospital stay can cause were highlighted, and patients who are living with the
effects of dementia were inevitably mentioned.Sadly,
I think many people reading the headline and acknowledging that dementia is
mentioned will, yet again, assume that all people with dementia are violent.
Little consideration will be given to how hospital environments contributed to
the circumstances around these incidents, or indeed how the lack of
comprehensive staff training or appropriate staffing numbers did
likewise.What
also won't be examined is how many people were avoidably in hospital in the
first place, or who had remained there for far too long when not clinically necessary because of failings in the availability, organisation or funding of
social care places. It's just quick and simple to look at older people and say:
"They are violent because they have dementia and are attacking the people trying to care for them."What
has to be understood is that people with all different dispositions and from
all walks of life develop dementia. If you were an unpleasant person with a
quick temper and a tendency to be violent prior to developing dementia, your
dementia may or may not make those character traits more pronounced.Likewise,
for some people who were mild-mannered and never hurt anyone, the development
of dementia can lead to symptoms such as paranoia, hallucinations, disorientation, confusion and anxiety that can result in a person lashing out without realising
they are or without intending to. It is simply their reaction to what they are
experiencing in that moment, allied with the circumstances (environment,
staffing etc) that they are in the midst of.Delirium
and other mental health problems that either haven't been diagnosed or aren't
being well treated can also contribute, not to mention the side-effects of a
medication, poly-pharmacy or indeed something as simple as a urinary tract
infection, being hungry or tired - do not underestimate the effect of
sleep deprivation. A person may also feel angry, ashamed or undignified if they
aren't being supported to wash, use the toilet or be mobile in the way they would want to be, resulting in feeling uncomfortable or becoming incontinent or
immobile.I am
not in any way making excuses for violence against NHS staff, nor would I ever
condone it, but before we brand older people as violent patients I think we
need to understand how being a hospital patient can make you feel.Last
year I spent one night in hospital following the birth of our daughter. All the
care I received was wonderful and the staff were very kind and helpful to me.
But I didn't sleep a wink. Nor did I particularly like the food. I definitely
wanted to lock the bathroom door when I went for a shower, and ideally would
have preferred to keep the curtains around my bed closed, but because we all
had to be in view of the staff so we could be monitored, that wasn't possible
except for breastfeeding or getting dressed. Granted,
I had just had a baby and hormones were going wild, but fundamentally I was a knowledgeable,
articulate person who could speak up for myself and wasn't in danger of having
to stay in hospital any longer than was absolutely necessary. Yet I felt
vulnerable. And if I can feel vulnerable, then I can only imagine how an older
person, potentially with reduced communication abilities due to their health, might feel.I
have written before about how undiagnosed pain in a person with dementia can affect that person. I've also written about unmet needs being misunderstood as 'challenging behaviour' (a phrase I hate), and about the effects of illness, incontinence, hunger, dehydration and sleep problems. I've also addressed the shortcomings in hospital environments for older people in comparison to the environments we offer children.All
of these issues can easily converge and result in avoidable incidents.
Aggression is so strongly linked to dementia that I meet people who are
surprised if their loved one isn't aggressive. Yet there is so much that can be
done through person-centred care, occupation, reablement/rehabilitative support and life-story work to support people with dementia
to cope with their symptoms.Whilst
the BBC based their story on firm evidence, with figures obtained from NHS
Protect (the organisation dealing with crime across the health service), I
suspect that many people simply won't see beyond the statistics and examine the real
issues, let alone tackle them. As a result fear of having contact
with older people and people who have dementia proliferates. With such ostracisation
comes isolation, and an even greater chance of people who are already feeling
misunderstood reacting to that in ways that hurt them every bit as much as
those trying to provide care and support for them.Understanding
about dementia has improved over the years, but it isn't where it needs to be to
provide appropriate, individualised support for every person. Geriatrics isn't
an area of medicine that is oversubscribed with our brightest and best
professionals in the way paediatrics might be considered to be, and ageing
within our society still isn't universally viewed with dignity, respect or
compassion. Often older people's services are underfunded, stretched to
capacity (and beyond) and seen as little more than a 'dumping ground' for
people viewed as adult babies and stripped of their identity.We
are long overdue a complete re-evaluation of how we care for older people in
hospital, including the need to even be in hospital to begin with, and an
honest stock-take on how circumstances (many of which we can control) result in
incidents that are then beyond anyone's control, least of all the patients at
the centre of them. As in all areas of healthcare, prevention is always better
than cure.

Monday, 11 July 2016

Last week was the first ever National Co-production Week, identified on twitter as #CoProWeek. Organised by the Social Care Institute for Excellence, the creation of this awareness raising week marks an important milestone in recognising that if you work in health or social care, it's actually a pretty good idea to listen to, involve and continually work with the people who are using your service(s).Purely co-incidentally, the start of National Co-production Week also saw the launch of a report I was involved in creating with Carers Trust that looked at the 'Care Act for Carers: One Year On' (PDF). Amongst our recommendations was an explicit remit (on page 23) tasked to one of the pioneer co-production organisations, Think Local Act Personal, to involve carers (people who care, unpaid, for a friend or family member) in services:

"Think Local Act Personal should work with carers to devise and offer training and materials to support practitioners to work with carers to co-design personalised support."

We also reiterate the importance of ‘co-design’ in our 2018 ‘wish list’ (on page 25):

"Social workers and other care practitioners can show that tailored support plans are routinely co-designed and kept under review with carers."

The history of co-production

'Co-design', or 'co-production' may sound like modern day jargon (they are unpopular descriptions with many people I know), but various incarnations of the basic principles of involving people who use services, and their carers and families, in how services are designed, created and run have been around for many years.If anything, that is my personal disappointment. Through my work I’ve met stalwarts of the 'co-production scene' who have been co-producing for an incredibly long time and yet they feel little has changed on the frontline. In my view, that lack of change isn't a reflection upon those individuals at all, but more about how our health and social care systems respond to those people and the need to challenge the status quo.Historically, we’ve been far too keen on ‘doing things to people’ rather than truly involving people in their own care and support. We like to tell our fellow citizens how things will work and what will happen to them, being prescriptive and precise, and expecting them just to go along with it. Their own opinions have been seen as irrelevant, perhaps even dangerous, and of course 'professionals know best' anyway. In other words, citizens (patients, service users, carers and whatever other labels you want to affix to ‘Joe Blogs’) should be ‘seen and not heard’.In June 2012, I wrote a blog entitled ‘How do you make good dementia policy?’. Much of what I talk about in that blog is about co-production, except I didn’t call it co-production then. To me it was just the simple principle of involving people, which I summed up in this quote:

"My view is that you need those with direct past and present knowledge and experience of dementia to be at the forefront of policy making, privately and publically."

Tokenistic involvement isn’t enoughI have a fundamental belief that within health and social care, there is still an arrogance amongst many leaders to even involve citizens in their work, never mind truly embracing co-production and embedding it within their organisations. Often involvement is tokenistic, piecemeal and descends into glorified talking shops, which are then evaluated poorly and deemed pointless.Budgets to support true co-production rarely exist, or are extremely limited. Interestingly, these funding arrangements are always decided by people employed by organisations, and I do wonder if being in the safely of a salaried job stifles the desire to engage and create beyond your own job description.That may sound harsh, but given that in 2012 I was writing about the need to involve people who use services and carers in those services, I simply haven't seen enough innovation to justify a more positive assessment. If we could get to a stage whereby the viability of health and social care services was judged by how well they engaged with the people using their services, and their carers and families, I suspect a rapid improvement would soon follow.Current, classic examples of organisations not engaging are seen on the conference scene, where too often I still see programmes for events that don't include the voices of experience. From the knowledge I have through my work, I don't believe that enough local authorities co-produce their services with their citizens, nor do NHS trusts or social care providers, and likewise for national government.And yet, in that 2012 blog post I made the value of lived experience crystal clear when I said:

"The greatest educators are people who have learnt from their own experiences."

Time to changeI am impatient for change, I would freely admit that, and those who are embracing the true principles of co-production don't get enough praise for their work. For everyone else, I come back to this quote from that 2012 blog post:

"If you want to know about frontline warfare, you ask a soldier. If you want to know about famine in Africa, you go to Africa and ask the people who are starving. If you want to know about dementia, ask the people living with it and carers past and present who have dedicated their lives to understanding dementia."

For dementia, read any condition, any service, any experience. There are always citizens to ask about their health and care, always something to learn from listening to them, and always a way of meaningfully and fully engaging them in how you serve them now and in the future. It really isn't rocket science.

About Me

I'm a campaigner and consultant, writer and blogger. My dad had vascular dementia for approximately the last 19 years of his life. I aim to provide support and advice to those faced with similar situations, inform and educate care professionals and the wider population, promote debate and create improvements in dementia care.